Really bad week
 

I'm having a really bad week. On Monday morning I woke up having trouble moving. Tuesday morning I could barely put one foot in front of the other. As I'm trying to save my leave up for surgery and I can sit at my computer at work as easily as home, I figured I'd try to get into work and borrow a wheel chair to get to my desk.

My dad offered to drive me and drop me off in front of the building. It took about 10 min to drag myself into the front door and to the clinic. Unfortunately there was a substitute nurse on duty who didn't know about my condition. When I asked to borrow a wheel chair, she said it would be negligent if she handed me one and let me go, that I needed my doctor's permission. I told her to call UMD and get everything approved. Unfortunately, my doctor was out of the country and between fellows, so only a general neurologist was covering her cases. Since this doctor didn't know me from Adam, I told the nurse to call my GP and get permission for the wheelchair.

Seemed like a reasonable idea, until my GP heard I could walk and said he wanted me checked out by the ER. I figured out where this was heading and told the nurse to call my dad and I would take the day off. Apparently that was a no go. OK, call my dad, and we'll go to the ER at UMD. That was a no go as well. Something about continuity of care...I had to go, by ambulance, to a hospital which doesn't treat my condition, their justification was that I could be having a stroke.

After about two hours of sitting around doing nothing in the ER, I asked if I could go home. "No, we're waiting for a bed to admit you," was the response I got. They did add that if I signed myself out insurance wouldn't pay (as they probably knew what I was thinking).

So they admit me to the neurology floor and I figured, alright as long as I'm here, I may as well get treated, and asked if they could setup PLEX. The nurse told me that I'd have to be moved to a dialysis ward, as they don't do that in neurology. She said I'd get probably receive I high dose medrol. I explained that I was having a thymectomy in a month and I could breath, therefore, steroids was not an acceptable solution.

At that point the staff doctor comes in and takes all my info and notes that I won't do the steroids without my doctor's permission, so he just puts me on fluids and says that they've paged a neurologist who will see me when he's available. Then the nurse brings in a glucotrol pill, which surprised me a bit and I asked if I was running high (as I'd been low when they brought me in). Apparently, I wasn't on the list for finger sticks so she didn't know and they hadn't run a glucose test. I refused that treatment, as well. Then they did a chest x-ray. I'm really not sure why they did it, but I had no grounds to refuse.

The neurologist finally gets there at about 11:00PM and performs his exam. His conclusion was that the MG is actually relatively under control and that something else is going on in my legs causing the trouble walking. I asked what he thought, but he said that I'm not his patient, I need to discuss that with my neurologist. However, he wanted me to stay at home until after my IVIG treatment and then see how I am (so I ended up loosing three days of leave). At that point I asked if he could look up the Stiff Person Syndrome test that my neurologist had ordered. He came back a few minutes later with the results. A normal GAD level was <.02 nmol/l, a level of >.03 could be used to confirm the DX. My result was .29. At least at that point the neurologist discharged me.

Unfortunately, the nurse on duty at midnight decided she could de-access my port even though she'd never touched one before (I had to tell her to flush it before removing the needle), so now I'm hoping it wasn't screwed up.

At this point, my doctor is still out of communication so I haven't been able to discuss the test results with her. I did, however, start breaking up my klonopin dosage so I'm taking it three times a day instead of at night and the walking has improved quite a bit, which leads me to think that SPS may be responsible for that. I guess I'll have to see how the IVIG treatment goes over the weekend and hopefully my doctor is available next week. Sorry this is so long, but I felt a need to vent.

Uuugh! How frustrating! I applaud your patience in dealing with "the system" so rationally.

How soon til your neuro gets back from being away?

It's amazing how few docs don't know mg. Can u google an mg specialist in your city and ask him or her to consult?

My eye is super blurry from the heat...hope this post makes sense.

Hang in there!!

This heat is killing me. I'm not a "inside" person. Now taking 2 naps a day. It should be over in a few days, hopefully.
Mike

bad week
 

Backwardpawn, I am so impressed with your self control and willpower...even the first bit of your story made me mad, that someone would deny a person a wheelchair. Sounds like you're having a rough time amid a new facet of diagnosis, and I'm sorry you had to deal with incompetence and people who seem just scared to act in a logical manner. I hope things are getting better and that you get what you really need without further issues. My thoughts and prayers are with you!

Hopefully you are feeling a bit better today. I'm really glad you detailed your hospital experience...something I shall remember about staying in control (as much as possible) over the system of (sometime) incompetence!!

So sorry to hear you are having such troubles, but that is exactly why I try to avoid hospitals if possible. There is such a breakdown in communication concerning the patient, and it does not have a good result. Hope you get it all sorted out soon. We all have to rant at some time or another and mostly only people here truly understand.

Hi all,

Just thought I'd give an update. My doctor was expected back on Friday, I'm not sure if she was in or not, but hopefully I'll hear from her in the next couple days. I cut back on my Mestinon quite a bit, as I was taking it with the expectation it would help me walk, but wasn't having much luck. I think my eyesight is better on the lower dose. I am having luck with the klonopin and muscle relaxants, though. I'm sure the heat is making my condition worse, but my legs are literally tightening up to he point that I can't move them every six hours, or so...then I take the meds and I'm able to walk with a cane until the meds wear off.

Hopefully the IVIG kicks in and smooths things over (port worked ok, but the nurse was upset when she heard someone without training messed with it), but I think I'm finally starting to get to the bottom of whats going on. My last neuro took me off all muscle relaxants and benzos due to the myasthenia. My condition got really bad at that point. My current neuro added them back in in low doses because she suspected some kind of arthritis. It wasn't until recently she started thinking SPS--and I'm thinking that's probably whats going on, or some variation of it. Anyway, I need to get some sleep. Thanks for the support.

Jeff